Cystic acoustic neuroma

[tryherd]

I am thinking someone in this group may have a link or resource for me to better understand the risks or complicating factors involved with tumors with a large cystic component.  My 4.5 x 4.0 mass as seen in the MRI may be almost half composed of a cyst.  I have surgery soon and would like to know more going in.

Thanks, All.

[nancyann]

hi there tryherd,  I'm not familiar with a cyst component,  but by the sound of it, I think a tumor is more solid & a cyst is encapsulated with fluid.
Your tumor is large, so surgery it is.   I was really sick post op, felt like I was hit by a mack truck:  vomiting, severe headache, others have a smooth recovery,  it's all individual.
You will be very fatigued for ~ 2 months + imbalance, it takes weeks to months to re-learn your balance;  again,  everyone is individual, so you'll see
what issues you have to deal with.  Most of us have trouble adjusting to grocery stores, malls, etc - it's all the people coming at you causing you to lose your balance.
  
After all is said & done,  you will recover, adjust,  & best of all,  you'll feel well again & life goes on ! !
Any questions you have,  we are all here to help.

Always good thoughts,    Nancy






 

[sgerrard]

As Nancy said, at 4cm plus, surgery is the only choice. I Googled cystic acoustic neuroma, and did find articles on the subject, though none seemed particularly definitive. I got the impression that large cystic ANs are relatively uncommon, and do pose additional issues during surgery. The facial nerve seems to get mentioned a fair amount. I don't know what that all means, but it does suggest to me that getting opinions on your case from the best surgeons around, i.e. House Ear Clinic or comparable, might be worth it.

The outcome of your surgery is not guaranteed in any case; it could be better or worse, you just have to find out. You will get through it one way or another.

Steve

[jazzfunkanne]

Hi my AN was over 4.5cm surrounded by fluid i am doing fine, i have a friend in italy whos AN had a cystic component if you want her email address let me know she would be happy to talk to you

[joebloggs]

Hiya,

Although mine is not as large as yours, it is also at least half cystic.  From what my surgeon has told me (my surgery is in 4 days) the cystic component makes things a little more complicated.  It is a bit more complicated during surgery (for reasons I'm not sure why... although it's still totally removable, just a bit more tricky), but the big problem comes with radiation apparently.  From what I remember he told me, the cystic part can react weirdly to radiation and start getting much larger all of a sudden.  When you have an AN my size (and particularly yours... however they wouldn't do radiation on one your size I don't think anyway) if it's already touching the brain stem, you really don't want it growing unpredictably after radiation, hence surgery is the only option, plus when you radiate, the radiation doesn't affect the area of AN which is behind the cystic component.  Something like that.  I'm sorry it's a big vague, but this is my recollection.  Basically, if cystic it's a bit trickier for surgery, therefore you want to make sure you have a good surgeon.  I'll let you know how I get on on Wednesday with mine!

Cheerio

JB

[Debbi]

Hi there-
I can chime in on this one too - my AN was quite cystic but smaller than yours - only about 2.5. Still the fact that it was cystic made it "stickier" which makes it a bit harder to remove.  I don't know that cystic tumors always involve the facial nerve, I only know that mine did - it was quite stuck to my facial nerve and they left a few little bits behind to save the nerve.  I am 10 months post op and have pretty good facial function back, although still some dead areas.  Experienced surgeons will have experience dealing with cystic tumors, so you should be in good hands. PM me if you want to chat, okay?

Debbi

[tryherd]

Thanks to all who responded.  Your thoughts and information are both comforting and helpful.  I agree that surgery is my best option and am already scheduled for surgery in nine days (I am not counting the minutes, yet).